The University of Stirling are conducting research to find out more about how relationships between couples with a learning disability are supported when on partner has a diagnosis of dementia. We would like to talk to one or both partners about their experiences. The relationship may be current or previous.
We would also like to interview staff and family members who support, or have previously supported, someone in a relationship where one partner has a dementia diagnosis. All interviews can be in person or virtual.
Hello,
I was a family brother sibling carer for my sister an adult with learning difficulty for 25 years, after the last of our parents died .
i do not have dementia, tried to approach organisations that claimed to understand learning difficulty one of the saddest things i ever did ,never had i experienced pure ignorance total lack of understanding empathy was not on any one radar .
how i turned my sister’s life around.
was to request a direct payment, I developed a care plan that meet her needs, not that of the organisation.
employed carers with open mind sets trained nearshored the carers to understand my sisters needs in a way that met her needs the care package was for a 24/7 care, our family home became the new workplace set up a trust fund account for care package money to be paid into for my sister care, employed an accountant to manage the wages and all things to do with employment paid for from the care package needless to say care provided on a personal level worked for my sister the last 15 years of her life was bliss just wished my parent were around to see it.
just one way to support an adult with learning difficulty choice is a Magor factor in any care
hope you find this helpful.
take care,
don.
This is such an inspirational story to read, and one I will share with my family when we have discussions about the future. Thank you for sharing, Don.
I too found your story inspirational. Thanks so much for sharing it.
I would be really interested in hearing about it in more detail as I think I could learn a lot from your experiences.
How did you learn about direct payments? How did you develop the care plan? What worked well? what was difficult? how did you find the carers? What help did you get in setting up and managing the direct payments?
To hear you describe your experiences when you approached organisations that claim to understand supporting people with learning difficulties/disabilities with words such ‘pure ignorance’, ‘total lack of understanding’ and ‘empathy not on anyones radar’ is extremely disappointing. If you felt this at the time, I am sure that many other people must have and probably continue to feel this way. How do you think these attitudes and experiences can be changed?
Hello Neil,
i do hope thing have changed for the better by now ,one thing to remember this was at the very start of a massive change, the year 2000 year of change beought hope and love back into the lives of our most vulnerable long live fare access to care that turned health and social care on its head.
the old systems were still in place this being block booking, in Bristol block booking for care from care organization were made on a five to seven year in advanced contracts so when this massive change hit them health and social care went into turmoil ,something that was not on their radar the contracts were so sloppy if health and social care needed to changed terms of the contracts hefty penalty were incur guess H & S C were in a no win place all that could be done was blag it out, for as long as possible but for family and adults being supported in the community it was impossible for any change to happen .
to give a quick answer to questions
how did i learn.
sadly, i had to complain to my M P demanding she ask a question in parliament why i was caring 7/24 with help she was so concerned it was her that gave me of the copy white paper
developing a care plan .
this was one of the more fun things i did understanding my sisters quirky ways made me realise we were not too different in our mannerisms and what upset us.
what worked well
simple just having choice
what was difficult
having to deal with social worker that had a bios towards family carers many were openly aggressive
what help did we get
very very little
a small group of family carers that just wanted to do the best Thay could came together we called ourselves inclusion south west
between us we did research familiarised ourselves with most of the care policy from the valuing people white paper used this to get social workers to listen we came to the attention of university of the west of England became an integral part of student training for serval years
care provider
as you can imagen being in a place where you could dictate to the person paying you, must have been a dream come true
that were
arrogance ,
no empathy,
total lack of understanding
not having any radar
fixed charges
comes to mind i could talk for a long time about the ups and downs at the beginning of fare access to care period it is in parts a grim story the one thing that keep us carers going was the knowledge we all believed in what we do
for me the struggle is over my sister has now passed away only wish my parent could have seen her enjoying life like i did
however, if you are down my way and would like to meet up i would suggest put a good day aside, i will have much to share hopefully have an old carer colleague to share her story .
take care
don.